Friday, September 30, 2011

To explain or not to explain??

As I've said many times before, apraxia sucks.

Will has made lots of progress but I know most people can't understand him. I am still his translator.

I'm a bit annoyed that I had to wait nearly 6 months for Will's appointment with the Developmental Pediatrician and she didn't tell me anything I didn't already know. Expressive aphasia and oral apraxia. Really?! I could have told you that without wasting TriCare's money. Follow up in 6 months. Oh joy (note the sarcasm). She sent him for a chromosome test though it is unlikely anything will be found.

His therapies are going amazingly great! And Will seems to really enjoy school. He is trying new words all the time though it is not clear. Also?? He's into repeating questions instead of answering them:

"What did you do at school today?"
"da dool...?"
"Yes, what did you do at school?"
"da dool...?"

and it goes on.

"Will, where's the puppy?"
"da puppy?"
"Yeah, where's the puppy?"
"da puppy?"
"Is the puppy outside?"
"Ow-died?"

It gets a bit frustrating 'cause I just want an answer to work with but I know this is a great step in him speaking more clearly.

I've run into a new issue to deal with though. Since Will is becoming more verbal it is becoming more obvious to people that there's something going on. He's nearly 3 1/2 and can hardly put 2 words together. Most of his current words are unintelligible to 95% of people. I don't want people to meet my son and then I have to explain right off the bat what's going on with him... I want people to get to know him and how funny, clever, and inquisitive he is. Try to understand him on their own because he really is quite good at communicating non-verbally if you can't understand him verbally.

I especially don't want to explain to strangers IN FRONT OF WILL. To be honest, I don't want to make him start feeling that he's different. I'm sure he can pick up on it but I don't want to call major attention to it. Does that make sense?

Today I met a woman and her two kids who came over so I could get measurements and information for their Halloween costumes. I intentionally did not mention Will's apraxia. I saw the quizzical expressions on their faces when Will mentioned "ma-gee-gees" (mac & cheese) and his other words that I understand. I'm sure her kids had questions as to why that little boy talks all funny but I just don't want to give explanations anymore. Unless a person asks (which I know can make them uncomfortable) I don't want to just spurt out his diagnosis.

What do you guys think? I know it can help clear up some confusion for people... but all the time?

My sum up of Apraxia: a motor planning disorder that is caused by the brain and muscles not working together properly to create the specific movements that allow speech. It also affects some of his gross and fine motor skills which is why he sorta runs funny and seems awkward or clumsy in other movements. It doesn't affect his intelligence and he is of normal mental function and understands everything as well as a 3-year-old can.


Anyway, that's all I've got to share right now. Don't forget to enter the giveaway. Less than a week left to leave comments.


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2 comments:

  1. I know how that feels because i went through the same thing. And actually I'm still use to doing it, but I'm coming to realize that people do understand my son now. Have you tried giving your son the DMG supplement? We started with DMG and then moved up to TMG and I have to attribute that to the huge leap in speech. At 3 he had the verbal vocab of a 12 month old. And by 4 he was age appropriate.

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  2. Sorry if this is an obvious thing. I just thought it might still help to hear it "out loud". I haven't been in exactly this spot but I would say don't explain it. Probably most people aren't thinking about our kids as much we THINK that they are. If they do have a bad attitude about it then really that's their problem. We have all had a point where we looked at someone else's kids and thought that we knew something that parent didn't. And we've all had another person tell us that they knew better than we did. It's foolish of them but forgive them and keep going because YOU are the one who knows your kids the best.

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